#Dazzle4Rare is a cross-community undiagnosed and rare disease awareness week. Unlike most awareness events, this week is meant to enable rare disease communities of all sizes share messages for one another, signal boosting the messages to reach a wider audience. The base concept is simple – when you share for another community, they are able to reach your audience who may benefit from hearing their message or learning more about that. In doing so, others will share YOUR message enabling you to reach an audience you would not normally.

You can take a look at our past events on Facebook as well as the hashtag on social media since 2016 to get an idea of what messages are shared and what people are talking about. The end goal is always for organisations, advocacy groups, advocates, and patients to reach outside their “bubble” and exchange crucial messages with others allowing them to extend their reach.

#Dazzle4Rare is an on-going conversation and it is not meant as another means for people to “preach to the choir” but rather to work together as one large community for the benefit of all. It takes a lot of work, a lot of communication, but it worth the effort to increase the reach of every message that much more.

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How to participate in #Dazzle4Rare

There are a lot of ways to participate in #Dazzle4Rare every 2nd week of August! The most SIMPLE way is to follow hashtag #dazzle4rare on Facebook, Twitter, Instagram, LinkedIn, or whatever platform you use. As you scroll through the event posts, share rare disease posts and help elevate and signal boost undiagnosed and rare voices.

If that’s not enough and you want to take participation to the next level, here some of our top tips for individuals and NPO/charity organisations!


For Individuals

As an individual: you can follow the Facebook event page for each a list of participating communities’ approved messages (or see our Approved Messages page.) You can join the event and click “Going” to show your participation as well as stay informed of what’s going on with the event.

Now, head over to the mobile-phone friendly page on that will walk participants through the steps of choosing Facebook, Twitter, or Instagram to share posts. Once you click the social platform icon of your choosing, you can scroll through the posts hash-tagged #Dazzle4rare (each link takes you right to those posts directly), and share as usual! That simple!

Note: For Instagram you would need Regrann or a similar program or using screenshots.

Don’t stop there! We ENCOURAGE you to engage with #Dazzle4rare by creating your own rare disease content such as your own experience, rare disease facts, or organisations that you look to for rare disease support. Please make sure you use the hashtag #Dazzle4rare so others can share your posts!


For Organisations, Non-Profits, and Advocacy Groups

As an organisation: We welcome any non-profit, charity, or rare disease organisation who would like to participate. The goal is for groups of all sizes to share other groups messages to amplify rare disease messages during the campaign. Many organisations spend the whole year “preaching to the choir”. Dazzle4Rare is a way for your NPO, charity, or advocacy group to share messages with the folks who are likely to care most about rare and undiagnosed communities.

First, submit your 280 character message which includes the hashtag #dazzle4rare and your logo for our participants page, sign up for our NPO/charity email list below so you can receive the list of approved messages and links to the event assets you can use to schedule your website, blog, social media, and other posts.

Please note: Our email list is experiencing technical issues. YOU WILL NOT RECEIVE AN IMMEDIATE EMAIL TO VERIFY YOUR SUBSCRIPTION. Emails will be added to the list manually. You can use the form below to join or send us an email us and ask to be added to the list.

For non-profits, charities, and advocacy groups

Subscribe to our participating org list.

Please remember we use the honour system – by participating you agree to share messages – NOT JUST YOUR OWN – you’re already doing that every day! However you choose to participate, keep an eye on the hashtag #Dazzle4rare on Facebook, Twitter, and Instagram and share as you see fit.

We invite all approved NPO/charity organisations submitting their messages to also become an event co-host. There is no cost associated with participating or becoming an event co-host to our Facebook event. This opportunity is open to any official Facebook page or advocacy page as well. Co-hosts may post directly to the event page with their approved message or announcements for the week.

We encourage all of our co-hosts to share the event on their website, blog, support forums, and social media. Inviting family, friends, and colleagues to the event page helps to increase the number of eyes on the event and helps keep our virtual attendees informed as the event approaches and through the event week itself.

You can and should absolutely create your own social media posts using the hashtag so that folks following the hashtag can see your posts.

This year we’re selling merch and accepting gift donations to help support our work and yours! We hope to raise enough money to repeat our 2020 NPO/charity raffle. One registered NPO/charity will be chosen in a random raffle to win whatever we’re able to raise. Our goal is to raise at least £150 as we did in 2020. The Canada based organisation ANE International won last year’s participation raffle. We really hope we’re able to do this again for our participating NPO/charities!

We try to share as many messages as we can and always encourage individuals to share their own stories. One of the most educational parts of #Dazzle4Rare is people sharing their own stories. If not for that, many of us would not have learned about many of the conditions we now have come to care deeply about. It has also been a great way for advocates to get to know one another and form lasting bonds and create opportunities to continue to raise awareness outside of #Dazzle4Rare week.

Any questions? Please don’t hesitate to Contact us.

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